Driving with the check engine light on

So much of my life with cancer has been opposition.  One of my favorite shirts says in very big yellow letters "HOPE IS DEFIANT" which I realize out of context could seem a little shitty, but here's the context:  

(In the absence of hope) HOPE IS DEFIANT

This is a blog for my story with cancer, not against it.  It's full of opposition and contradiction.  Learning about things I didn't even know were available to learn.  Making decisions I didn't know were mine to make.  A gratefulness for something that, nearly by definition, I should be terrified of killing me, but which instead has made me more alive.  I won't go so far to say I love having cancer, let's be real, but I do love and appreciate the life I have because of cancer.  

I was first diagnosed with a very rare type of cancer called leiomyosarcoma in January of 2019.  Because it's rare, there isn't a huge amount of information about it.  More common maladies effect more people.  More people means more funding.  More funding means more information.  What is known is that surgery is the best option, radiation might be OK depending on location, and the chemo suggested is gnarly toxic and also pretty much ineffective.  

I had a successful surgery, then I had a consult with a sarcoma specialist in Seattle, who I assumed would help make a plan for surveillance, as I was considered cancer free at that point.  That appointment was one of the more confusing things I've ever experienced--to the point that I had him check to make sure he was talking to the right patient.  He strongly recommended a combination of chemotherapy drugs and recommended to begin immediately.  Oh, maybe fertility treatment real quick to freeze my eggs "just in case."  

*slow blink*

Tumors are graded, and what was considered "low grade" on my pre-surgery biopsy and post-surgery pathology suddenly became "high grade" for no clear reason.  Treatment plans are made using a rubric.  How large the tumor is, how quickly the cells are replicating, etc, decides the grade.  The grade decides the treatment.  Because the grade changed inexplicably, my treatment plan went from surgery only to adding chemotherapy.

I should say now, I'm not against chemotherapy.  I know it's making progress in certain types of cancers and people have been having an easier time with tolerating it as the drugs have become more specific and accurate.  This wasn't going to be the case for me.  

The oncologist left the room and a nurse came back with stapled together print outs about the chemo drugs we'd just talked about.  "You may want to read these later," she said.  Side effects were known to be so severe, patients are admitted to the hospital for infusions so doctors could intervene immediately to try and reduce damage should things go wonky.  While I can appreciate precaution(?) this wasn't any type of chemo I even knew existed.  It exists.  One of the three suggested drugs was a derivative of mustard gas, which didn't exactly give me confidence.  Nor did the fact that there would be no way to know if I was responding at all since I had no evidence of cancer in my body.  "An insurance policy" to keep it from coming back.  There wouldn't be a way to know if it was working.  

I left the room and while waiting for the elevator, I looked around at who was there.  It hadn't occurred to me until just then that this was a business and I was a customer.  We were all just customers.  The oncologist told me what he wanted to sell me because that's all he has in his inventory.  If I didn't want what he sells, I could say no.  I could go somewhere else.   And I did.  Maybe with the check engine light on, but I did.